For many years the society has been working hard to create awareness both at a local and a national level.
Our work with the government has resulted with thalassaemia being included into the UK’s National Screening Programme and the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia.
The work of the APPG involves discussing topics of importance to the sickle cell and thalassaemia community and reporting back to Parliament, with the ultimate aim of reducing health inequalities faced by sickle cell and thalassaemia sufferers.
People's experiences of sickle cell disease and thalassaemia disorders can be completely different. Click on the link to see a number of real life stories from carriers, patients and carers who give their account of what sickle cell or thalassaemia means to them. See their stories here.
Asian Awareness Campaign
Like so many Asians when I first heard of Thalassaemia my first reaction was thala …. what?
Having then obtained information and understood the relevance of this devastating condition to the Asian communities my second reaction was to ask – well why don’t we know about it then?
Having now been involved as a Patron of the Asian Awareness Project of the UK Thalassaemia Society I have learned much more about the condition and the challengers for health education and the public’s needs to undertake screening. This project, which was designed and delivered by the UK Thalassaemia Society, has demonstrated that teamwork by dedicated individuals can make such a large difference to our lives.
Thalassaemia is the commonest inherited condition of any major racial group in the UK today.
This project has shown that it is possible to provide sufficient and accurate information to the individual in order that they take up the opportunity of asking to be screened. The public’s response to the project has been remarkably positive and awareness has increased fourfold. The work is far from over, as we need to see 100% awareness and more uptake of screening.
It is now possible to mention the name thalassaemia to Asians in the UK without inviting the quizzical looks that one obtained four years ago, which be it a small is still a significant measure of this Project’s success. I have been most happy to be associated with the charity’s work and look forward to further developments in this area of valuable work.
Read all about the Asian Awareness campaign.
All-Party Parliamentary Group on Sickle Cell & Thalassaemia.
The Sickle Cell and Thalassaemia APPG was set up in October 2008 to raise awareness of the conditions in Parliament. Sickle cell disease is now the most common genetic condition in England and is more prevalent than cystic fibrosis. Estimates suggest there are 12,500 sickle cell disease sufferers and 1000 patients with severe forms of thalassaemia in the UK. One of the reasons I am interested in this area is because the conditions predominantly affect people from Black and Ethnic Minority communities. I have friends, family and constituents who are and have been affected by these conditions, so I have had the benefit of first-hand testimony as to standards of care for patients in the NHS.
Whilst patient groups and a small group of committed professionals have worked hard to raise the profile of sickle cell and thalassaemia and have campaigned to raise standards of care, at the APPG we feel that recognition of the conditions in the public, amongst policymakers and professionals is still low. Also, worryingly, a standard of care for patients is variable depending on where they live in the country.
The role of the APPG reflects these concerns. The work of the APPG involves discussing topics of importance to the sickle cell and thalassaemia community and reporting back to Parliament, with the ultimate aim of reducing health inequalities faced by sickle cell and thalassaemia sufferers.
Since its inception seven months ago, the APPG has brought together patients, clinicians and the Royal College of Physicians to discuss removing prescription charges for patients with sickle cell and thalassaemia. This led to an APPG response to the Department of Health’s consultation on prescription charges for long-term conditions. It is hoped that this intervention will persuade the Government to remove prescription charges for sickle cell and thalassaemia patients and will make a significant improvement to the lives of sufferers. The APPG has also discussed the social and educational impact of sickle cell and thalassaemia in a meeting with social workers, academic researchers, patients and representatives from the Department of Health and the Department for Children, Schools and Families. Following the meeting an APPG report on the issues raised was produced and both Government departments have done further work with patient groups to explore what can be done to reduce the social and educational impact of the conditions on young people.
From the APPG’s work so far it is clear that the Department of Health and NHS professionals have made a genuine commitment to raise standards of care, and services are improving. But there is still much more that needs to be done to improve the situation of service users. This means implementing the Standards of Care, developing clinical networks and educating health professionals to better understand the conditions. The ultimate goal of the APPG is to ensure service users are receiving the very best care and support; and we will continue to work with stakeholders to achieve this.
Diane Abbott MP
Chair of the All-Party Parliamentary
Read more about the work of the APPG
School & Young Adults Awareness.
Some leaflets to be used in schools and colleges: